HealingWell
Search Close Search
☰

Were my UC meds covering up something just as sinister?

Support Forums
>
Ulcerative Colitis
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 8/25/2012 3:39 AM (GMT 0)
I have had UC for 17 years with no real remission until after doing FTs..I tapered my Asacol to 2 pills a day..have not done a steroid enema for 5 mos after doing them off and on for almost 2 years(I know that was bad), tapering my Azathioprine(Imuran). For the last 2 mos my feet have been bothering me and I thought it was because I started running...but it got worse and when I get out of bed or am sitting a while and get up my feet hurt. The last couple of weeks by hands have begun to feel very stiff and a few fingers on both hands feel arthritic. My ANA titer was checked in 1996 and it was very high..1:1280 with a speckled pattern..did not know what that meant. Well, the doc was looking at RA or lupus but I had no symptoms. .I am having symptoms now..I wonder if tapering off my meds was just keeping me in another sort of remission..I am so sad. I finally thought I may actually have a shot at a little normalcy as UC has robbed me of it for so many years. I guess its time to frequent other forums.. I have an appt with a rheumy at the end of Sept. I know quite a few people with RA but it could even be lupus. I do know its something. I knew you guys would understand and I am just venting. Thank you for all your support.

Donna

Posted 8/25/2012 3:54 AM (GMT 0)
It could just be the enteritis arthritis that 25% of people with IBD get. I'm glad you're going to the rheumy. Don't get ahead of yourself and assume the worst, though.
Posted 8/26/2012 10:24 PM (GMT 0)
I had that happen as a bad reaction to Remicade after infusin #4: joint stiffness/pain all over, especially in feet and hands. Hands were so bad I couldn't even move my fingers. Had to do a 6-day course of steroids to get rid of the reaction. Just something to consider... could you have developed a reaction to the Aza? Otherwise yeah would see what Rheumy has to say.
Posted 8/27/2012 5:35 AM (GMT 0)
Hopefully it's temporary, i know how you feel. it's like once you get this disease your life becomes a bit like the movie "a series of unfortunate events".
Posted 8/27/2012 8:00 AM (GMT 0)
I have been experiencing more groin, leg back pain and worry too. My sister said, bodies change I can't sleep on my stomach since having my daughter. I,m glad we have this forum of people who understand why we worry more than the average person who doesn't see blood in the toilet everyday. Hope Kazbern is right.
Posted 8/28/2012 4:20 AM (GMT 0)
Conquer UC..You are right "a series of unfortunate events". The doc that took those tests years ago had said that since I had no lupus or RA syptoms that he would not bombard me with tests eventhough I had a very high titer. But, because of some of the blood results he did collect looked suspicious, he wanted me to see to come back if any sypmtoms did pop up..such as joint pain, skin rash, etc..That was 18 years ago..Now I have consistent joint pain in both hands and both feet. I am just nervous.

Allswell, you are right..it is nice to have people that understand. I do know something is not right as I know my body..like we all do when there is a chronic illness involved.

I have not done the biologics as I tried FT's first and it worked! So that would not be the cause.I have been taking since 2004, so I am thinking that would not be the cause..it could be that I have been weaning myself off the meds and its been keeping something else at bay..I guess my Rheumy will tell me..no appt till sept 24..

Thank you all..

 

Posted 8/28/2012 4:32 AM (GMT 0)
Ft,s worked? Can you give details and are you on a maintenance of them. I tried and threw in the towel but I feel like I should try again.
Posted 8/29/2012 2:12 PM (GMT 0)
Hi Allswell, FT's are working for me but I am on maintenance so far. I have been doing it since Mar 11th and my UC has been better than its ever been.Prior to that I was on flaring up quite a bit and I have had UC for 17 years..probably 18 now.  I do it about once every 10 days. The GI I see said the he feels eventually my donors gut flora will take over.

As far as details. My donor does his thing in a container, collects a sample. He  empties a saline enema and uses that. He puts a sample in a ziploc with sterile saline solution. He mushes is up real good and does not use a blender. He poors thru a paper cup using it as a funnel into the enema bottle. Cuts off the tip of enema container so nothing gets stuck..btw, on the enema container there is a little plastic thing under the tip that you have to pull off..we learned the hard way. Then I do my transplant.

I did this almost everyday for almost 2 mos. Then started tapering off.I also started tapering off my meds which I think was masking other issues as well..but so happy I am not flaring.. 

Donna

 

✚ New Topic ✚ Reply